03 July 2014

'You quickly became the love of my life with your very first breath. I'll never forget the moment I first laid eyes on you- it was as if we already knew each other so well- like long lost loves reuniting. I dedicated my life to making sure yours was all you deserved it to be. When we found out about your heart, we sought out the top hospital in the world with the #1 surgeons, doctors, nurses and facility. We learned to call this place home and even though it is the place where you took your last breath, we will always hold CHOP and all our heroes there very close to our hearts. What one mans error caused, one hundred shed blood, sweat and tears trying to fix. Your five short months with me were by far the most challenging and rewarding of my entire life. When told you had a significant brain injury, devastation once again encompassed us. That anger and sadness quickly turned to motivation and energy into finding the best therapies money could buy. Our at-home life was no vacation- we stayed busy with our several weekly doctor appointments where each doctor and nurse quickly became like family and with each passing visit they fell deeper in love with you. Every moment of my life I learned to cherish- each time we were re-admitted I was once again reminded of how precious your life truly was. But you fought- you fought harder than I ever knew you could. The amount of times I shed tears at your bedside while the nurse poked your tiny hands over and over again just to get a little blood will forever scar my heart. But I will quickly remember that smile that happened almost instantly as I wrapped my arms around you and held you close- promising you everything was going to be alright. The last time I think you really heard me I made you so many promises that I fully intended to keep. As the nurses performed CPR on your lifeless body, I focused on you and I wanted you to know this would be your last great fight for awhile- that we would go home soon and get out of our bubble and you would see that even though you learned to love the life you were having, the life I was about to introduce you to was so much better. I am devastated that you will never know that life with us- words will never truly express how damaged and broken I feel that you are gone. I miss you more than I ever thought possible and my entire body aches for you- right down to my very core. I am not sure yet how I will go on in this life without you and I hate that I even have to try. There are so many things we didn't get to do- too many to even mention. I will never understand why this happened to you and to our family. You will live on in me forever and I am so proud to be your mommy'.

This was read at Hayden's services on August 24, 2012- written by me, read by Sarah Talbert- Hayden's godmother. The photo is what was used in his obituary.